OP0056 “BECAUSE THAT’S THEIR JOB, ISN’T IT?”: EXPLORING CHILDREN AND YOUNG PEOPLES’ EXPERIENCES OF AND PERSPECTIVES ABOUT PAIN COMMUNICATION IN PAEDIATRIC RHEUMATOLOGY IN THE UK
Authors: R. Lee, D. Mountain, J. McDonagh, M. Connelly, S. Peters, L. Cordingley
Journal: Annals of the Rheumatic Diseases (2022)

Background Pain communication should be an integral part of every clinical consultation, particularly in paediatric rheumatology where children/young people often present complex long-term conditions in which chronic pain is a feature. Researchers investigating pain communication in paediatric healthcare encounters have been focused on healthcare professionals, yielding inconsistent findings about the occurrence and nature of pain discussions with children/young people. There has been limited research examining children/young peoples’ own experiences and perspectives on this in the literature to date. Objectives The objective of this study was to investigate children/young peoples’ experiences and perceptions of communicating about pain with paediatric rheumatology healthcare professionals in the UK. Methods Twenty-six children/young people were recruited from three UK paediatric rheumatology centres. Data were collected using semi-structured telephone interviews between April-October, 2021. A framework analysis approach was used to explore similarities and divergences in participants’ narrative accounts. Results The mean age of children/young people was 14.0 years (SD=3.6 years, Range= 6-18 years, 58% female). Diagnoses included; Juvenile Idiopathic Arthritis, Chronic Regional Pain Syndrome, diffuse idiopathic chronic pain, localised idiopathic pain, hypermobility (including Ehlers Danlos Syndrome) and Raynaud’s disease. Findings are organised into four themes. 1) Nature and focus of appointments. Children/young people talked about pain with several professionals from the team. Participants reported that pain conversations predominantly occurred during physical examinations. 2) Co-ordination of pain communication. Children/young people identified how professionals mostly started pain conversations. They explained how they were often asked to verbally rate pain rather than use a written assessment tool. For some, questions about pain were directed to parents. Participants reported that this was problematic as parents “can’t feel” pain. 3) Reflections on pain communication. There were expectations that pain should always be asked about as it was considered a main reason for a consultation. Participants discussed how these conversations gave them an opportunity to “get it off their chest” and made them feel “reassured” that professionals “care”. Being asked about pain reminded them that they were different to peers and they were concerned it could highlight “something else is wrong”. Children/young people talked about how it became easier to talk about pain with familiar professionals. 4) Moving forward after pain communication. Children/young people discussed how professionals could give mixed messages about how to manage pain at home following consultations, offering advice which was difficult to put into practice (e.g. “doing too much” vs “not doing enough”). Children/young people expressed their need to discuss the emotional as well as the physical effects of their pain. Conclusion These study findings highlight a range of effective and ineffective pain communication approaches from the experiences and perspectives of children/young people. These will be used to create recommendations for improving the communication of chronic pain in paediatric rheumatology in the future, in a way that is acceptable and valuable to children/young people. Acknowledgements The authors would like to thank the children/young people for kindly taking the time to share their experiences and perceptions about their interactions with healthcare professionals in paediatric rheumatology. The views expressed herein are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, or the UK Department of Health. This work was supported by a Foundation Fellowship award from Versus Arthritis (Grant 22433). Aspects of this work were also supported by funding from the Centre for Epidemiology Versus Arthritis (Grant 20380) and the NIHR Manchester Biomedical Research Centre. Disclosure of Interests None declared.